I kind of touched on this subject a while back in a post but I wanted to create one specific to it in hopes that someone else has some specific answers or experience with it. I have been on prednisone since Feb(I think)of 2010. I was put on it for pleurisy. T highest dose I've ever been on is 60mg, although I've also had 1 or 2 iv doses of 125mg Isumedrol. I had tried to taper 3 different times off the prednisone. The first time I ended up flaring with the pleurisy again so I went back up in dosage. The 2nd time I had a low cortisol level and was having bad adrenal dysfunction symptoms due to trying to taper which also ended up in a flare at the same time. I do recall having what I thought was a cold before all this happened. The third time I had another flare with pleurisy. Then I was put on MTX with everything else(see below at my laundry list of meds lol)After being on that for a few weeks at 7.5mg I started having anxiety attacks and it woke me up at night one time. When my labs came back my cortisol again was very low. So she raised me from 7.5mg which is the physiologic dose our bodies should make without supplement to 10mg which I'm on currently still. I guess what I'm to figure out now is what in the world is this exactly? Addison's, Adrenal Insufficiency, Adrenal Fatigue,etc? I know there are different manifestations which resemble and can mimic lupus. I also know in order of least to greatest level of severity would be Adrenal Fatigue, Insufficiency and then Addison's. My rheumy said she suspected it was lupus inflammation/flaring, adrenal insufficiency and something else closely related...sorry the brain fog has prevented me from knowing at the present moment! lol...ugh...

Anyway, my rheumy says the 10mg is enough to treat adrenal insufficiency until I can get in to see the Endocrinologist June 6th.
I guess I'm wondering what to expect when I go there? And I'm curious if this is really adrenal insufficiency which is caused by the prednisone since I haven't been on it as many years as a lot of you OR if it could be autoimmune adrenalitis because I had the adrenal symptoms even before meds....it would make sense even with the symptoms that seem to be nervous system related that haven't showed positive for neuropathy,etc. My neuro nor my rheumy have wanted to answer me about having CNS symptoms so I guess they don't believe that's what it is. My mri's have been normal etc so now I'm thinking perhaps they were right and this could be the adrenals and potential Addison's. Is there a way to tell the difference as to which is which?

I'm feeling pretty good the past few days...my MTX was bumped up from 7.5mg to 15mg 2 weeks ago and it seems the first few days are hard cuz i'm wiped out and then the last few days i'm pretty good as long as i stay inside all the time. I'm severely sensitive and allergic to sunscreen. 10 minutes tops and i have a rash even having shades open in the house. So, while i'm thankful that I am feeling well on the 10mg pred and the MTX, i'm kind of worried/wondering about the adrenal issue and if my adrenals have just shut down completely....lots of thoughts going through my brain right now...Hope you all are well.

-LadyBug

magistramarla

05-20-2012, 09:51 PM

Britt,
I don't know anything about adrenals. but I just wanted to give you HUGS.
I hope that you get this figured out soon. It's the waiting and wondering that are the toughest.
Hugs,
Marla

steve.b

05-21-2012, 04:27 AM

like marla,
i have no ideas for you......
but also wanted to offer a hug.
holding my breath for 6th june

SleepyInSeattle

05-21-2012, 07:22 AM

Also offering support and sympathy...and maybe some company...I am on 60mg of Prednisone for about 5-6 weeks, then in about a wekk I am supposed to start tapering off 10mg per week until I get to zero....depending on how things go, of course.

3 weeks ago I started on 7.5mg Mtx, going up 2.5mg each week until I get to 25mg/week....they're overlapping the tapers so hopefully the Mtx takes over for the Prednisone.

I have read that people have trouble with prednisone tapers, and mine seems very fast, so I am a little anxious about it. I do have a great doc, though, so I am going to assume he knows what he's doing until I see otherwise! He's done TONS of tests and scans and bloodwork, so I guess he knows me pretty well at this point, medically.

He did mention that being on a high dose of steroids for over a month will probably mean that my adrenal function won't be normal again for up to a year. When we get near the end of the taper, I guess we'll just have to see what happens. But I don't know how they figure out what causes what....he also thinks I may be at the beginning of Graves disease (?) which I guess means a mild thyroid issue. Lupus, Sjogren's, adrenal insufficiency, thyroid insufficiency- they all make you feel like crap, basically, I guess....

I hate taking so many meds. I am willing to suffer through a certain amount of feeling lousy to get off them, but when the "cure" is worse than the disease, ya gotta' wonder!!! :-P

I hope you get some good answers and feel better soon. And please know you have some good company out here.... :-)

Mommyof1

05-21-2012, 03:16 PM

Thank you all for your kind words and warm welcomes/hugs. I guess since I've not been able to really get any answers as to the adrenal issues that perhaps this is God's way of saying I'm to go this alone....fight my own battle and that this is a test for me right now. If it is, so be it. I am fine with that and can be patient and wait it out.

I'm glad to see there are those of you that are going through something similar though at least with the meds you are taking. It can be a wild ride with Lupus.

I hope you all are feeling better as well, I've had a scratchy throat going for a couple nights now and today after being outside a bit my skin and throat are burning. Not quite sure why. I've also noticed some ulcers in my throat...i can feel them more than see them but I'm not sure if they're being caused by Lupus or the MTX. I thought I was in a remissive state for a few days this week and last week..first time ever I think besides on the higher doses of prednisone which caused side effects any way. We'll have to see what happens. I'm curious as to what kind of testing the Endocrinologist is going to do and how all that will pan out. In the meantime I got my regular labs done today to test for the basic CBC, CMP...organ function and blood counts, complements, inflammatory markers, antibodies and urine. So, that's all I can do for now...more waiting!